Sydney Towle, a social media influencer who shared her experience of living with a rare and aggressive cancer with more than a million TikTok followers, has died at the age of 26.
Her family announced her death on her social media accounts on Thursday, saying she had died from complications related to bile duct cancer that had spread to other parts of her body. Towle had been living in New York City at the time of her death.
In a video message posted on TikTok, her brother Austin appeared alongside their mother and said: “Syd went peacefully last night after an almost three-year-long battle with cholangiocarcinoma.” Towle had been moved to hospice care earlier in the week.
Cholangiocarcinoma, also known as bile duct cancer, was the illness Towle had spent nearly three years discussing publicly. Through videos and posts, she documented chemotherapy, hospital stays, physical changes, difficult medical updates and moments of ordinary life with friends and family.
Towle had more than one million followers on TikTok and more than 200,000 on Instagram. Her family said she had wanted her online presence to help other people understand rare cancers and encourage patients to speak up for themselves during treatment.
“We are so proud of how hard Sydney fought and for sharing her journey with so many people,” her family said in a statement. “She wanted to raise awareness for rare cancers and was passionate about promoting self-advocacy. We will continue her legacy and honour her in every way we can.”
In May, Towle posted a series of videos from hospital while receiving treatment for complications related to her cancer. She told followers that the disease had spread to her peritoneum, the membrane that lines the abdominal and pelvic cavities and helps protect internal organs.
On 19 May, she shared a video of herself sitting beside her mother in hospital and said her oncologist had told her he would no longer treat her cancer, recommending that she begin end-of-life care. Towle said in the video that she would not accept that decision and planned to continue fighting by moving to another specialist.
Despite the seriousness of her illness, Towle’s posts often focused on optimism, friendship and joy. She shared videos of herself dancing, getting ready, spending time with friends and speaking candidly about the emotional and physical effects of cancer treatment.
She recently fulfilled a dream of modelling when she walked in a swimsuit for The Chemo Club x Post Swim show at Miami Swim Week. The appearance was among the milestones she celebrated with followers while continuing to discuss her health openly.
In one post in March, Towle wrote: “Rich in life because my friends choose to spend a Saturday fundraising for cancer research.” In another post last year, she told followers: “Go get a pint of Ben and Jerry’s, watch your favourite movie, remember that life is good and bad things happen sometimes but that doesn’t make it a bad life.”
Towle also spoke openly about her body after treatment. She did not hide her stomach, where she had a hepatic artery pump implanted, and posted swimsuit photographs while reflecting on scars and resilience.
“I have only recently started seeing the resilience and beauty in this body,” she wrote last year. “Scars that remind me of how far I’ve come. And I’m reminded that dreams only end when you allow them to.”
Tributes were posted beneath her family’s announcement and across her social media pages. Actress Alyssa Milano commented: “Sweet angel. Fly high. Praying for all who loved her. She is really something special.”
Other followers thanked Towle for sharing her life online. One person wrote on Instagram: “You were such a bright light and will be missed.” Another said: “How lucky we all are to have found you on the internet. Thank you for sharing yourself and your story.”
